Charlie’s Story
Our son charlie was diagnosed with a grade 3 ependymoma in June 2018 (aged 2years old). Charlie underwent major brain surgery and chemotherapy at Manchester Children’s Hospital which was unsuccessful. We were told that nothing more could be done and that Charlie was being referred to Christie’s for palliative care.
As Charlie’s parents we were not prepared to accept this and sought a second opinion from a Surgeon named Conor Mallucci based at Alder Hey Children’s Hospital. Conor was very honest about the severity of Charlie’s tumour, but said he was willing to carry out a second look surgery. Charlie was admitted to Alder Hey in September 2018.
The day Charlie had his second look surgery he was in theatre for a total of 14 hours. As you can imagine we were beside ourselves with worry, but to our complete amazement Conor informed us that he and his colleagues had managed to remove almost all of Charlie’s tumour. We felt utter relief. We had hope again.
Charlie was not unscathed following the surgery as he suffered cerebral mutism and had to learn to walk again. Once well enough Charlie underwent a third major brain surgery to remove the remaining tumour. Having then achieved a full resection (something we were initially told would not be possible) Charlie went on to have a 6 week course of proton beam treatment in Germany funded by the NHS.
We spent Christmas in Germany as a family with Charlie and his two brothers Jack (then aged 5yrs and Harry aged 1yr). Charlie completed his last treatment on 31/12/2018, we then boarded a plane and was home to see in the New Year.
Charlie’s following 3 monthly scan was all clear we could barely believe it, we felt such relief. Unfortunately, Charlie’s following scan showed something suspicious, unable to confirm if this was a relapse for 6 weeks we decided to visit family in Australia for 4 weeks. Following our return the scan confirmed our worst fears, Charlie had relapsed. On Charlie’s 4th birthday September 2019, he underwent his 4th major brain surgery, once again Conor was able to carry out a complete resection.
Charlie was given a course of introventricular chemotherapy which was cut short following swelling in his head. Charlie’s next 2 follow up MRI’s were all clear, but sadly Charlie relapsed again in October 2020. Charlie had his 5th major brain surgery which again resulted in a full resection. In February 2021 Charlie’s tumour returned and the scan showed multiple new tumours, Charlie was given palliative care but died on 07th April 2021 at home with his family.
We could not have been prouder of Charlie he fought all the way to the end. Charlie never ever complained and we would go so far as to say, he loved going to hospital. Charlie always carried his favourite “Blue bear”. He had the brightest most beautiful smile and an enormous heart.
As parents we are completely heartbroken and the most difficult thing to accept is that we know Charlie loved life and wanted to live.
During all his treatment Charlie was supported to attend a mainstream school with his brothers. Everyone loved him and he loved them. On the day of his funeral the village where he was buried was adorned with flags and people all wearing blue (Charlie’s favourite colour).
It is utterly devastating to loose a child, it hasn’t just affected our family it has impacted everyone whose lives Charlie touched. In his memory we want to set up the “thumbs up for Charlie” Foundation and in doing so hope to give back to families also affected by childhood brain tumours and help fund vital research in to pediatric ependymoma brain tumours.
Who we are
As Charlie’s parents (Nici and John) we wanted to do something in Charlie’s memory. What really helped our family was knowing that there was support available.
Respite breaks were invaluable for our family. We were able to have much needed breaks provided free of charge by Charities. This enabled us to create special memories without further financial burden. We were able to spend quality time with Charlie and his siblings (Jack and Harry). It enabled us to have the little bit of “normality” we craved.
When you have a child who is going though treatment it impacts on every aspect of your life; family dynamics, constant stress and anxiety, constant hospital visits for check ups and treatment, prolonged stays in hospital, the constant worry of a relapse, infection etc and in addition to this is the massive financial contraints. As Charlie’s Mum I became a full time Carer to Charlie and gave up my job as a Counsellor. At the time John was Self Employed and had to have a number of months off work unpaid.
We were lucky to be surrounded by communities near and far who wanted to help us in anyway they could. We set a target to raise money for proton beam therapy (which to date is the most effective treatment following surgery, with the least side effects on a young developing brain) at the time this was only available in Florida or Germany. We were initially told Charlie would not be eligible for this treatment on the NHS and were encouraged to fundraise sooner rather than later as there was only a small timeframe between Charlie's treatment and when he would need to begin the proton beam therapy. Our target was £100,000.00.
Never in our wildest dream did we expect to raise this sum of money. However not only did we raise above and beyond our target…but we achieved the target within 5 days!!
Our community have been fundamental in supporting our family and following Charlie’s story. We know that we still have their support as we already have a number of fundraising events planned to raise money for “thumbs up for Charlie” Foundation.
Charlie touched everyone's lives, although he was taken from us far too young, his strength, determination and love of life has given us the strength and motivation to make this charity happen in his memory.
Our goals
The ability to save or think about a holiday or a break does not enter a families mind whilst they live through the hell that is childhood brain tumours. It is small acts of kindness and time as a family away from treatment and hospitals which makes it a little more bearable. Respite can be hard to find, but when you do the breathing space of a couple of days away is profound.
Helping to better inform families whose child is diagnosed with a paediatric brain tumour, by supporting Hospitals (e.g. Alder Hey Children's Hospital) and/or Charities (e.g. The Brain Tumour Charity, Brain Tumour Research) to carry out future research into the treatment of childhood brain tumours, more specifically ependymomas.